Daily Archives: January 14, 2011

Today it is with a heavy heart but firm purpose that I begin this blog. Earlier this week, my husband Rick and I received the worst possible news: that our son, Ronan, has Tay-Sachs disease, a rare, incurable, genetic, progressive disease that will claim his life in the next few years. Of course there are no real words to describe our sadness, anger, grief, and feelings of helplessness. Agony is not an experience easy to describe, even for a writer. Over the last few days I have struggled with how to tell myself how I’m feeling, how to tell the story of what’s happening, how to create order from chaos, which is what writers do (and often to our detriment). I have come up violently short. The narrative is empty. There is only a sense of hollowness, blackness, void, of wanting to literally crawl out of my own skin. Even this description is not sufficient. But I am a writer. I write. And just as I have written through every experience, euphoric or horrific, throughout my life, I will write my way through this, and I hope those of you who know and love Rick and me and Ronan will be a part of this record of his time here, on this blog, and many thanks to W for setting it up. Ronan means “little seal” in Irish; I knew it was what I would call my child when I met a boy called Ronan (and he was a boy then) outside the Lecky Library at Trinity College-Dublin in 1994 on a warm, rainy afternoon.

Today, although we do not know the full details of what lies ahead, we know that it will be the most difficult test of our lives; we know our time with Ronan is limited, and that he will change, and that we will suffer, but because we are his parents, and because we made a commitment to love him, no matter what, from the moment we saw his microscopic heartbeat on an ultrasound in a doctor’s office in Santa Monica, we will make sure that each remaining moment of his life is touched with beauty and joy and grace. This public record of his life is part of my commitment of unconditional love. In it, I plan to break every rule I bark at my writing students: I’m not going to edit or “shape” my prose; I’m not going to identify “themes” and try to “tease them out.” (I will spell check, though!)

Writers tend to live in the past, dissecting moments and mining memories for stories, or in the future — what will happen with these characters? How will I shape this scene? Will anyone EVER read this story or essay and what will they think of it? What will they think of me? — and in so doing we rob ourselves of the present moment. My only task as a writer, from now until the moment Ronan passes, is to remain current, so I will begin each blog post with “today,” because today, this moment, this second, is all that Ronan knows or ever will know. He does not understand that he is dying, and he does not care. He is not in pain, and we are assured that he never will be. In this way he is mercifully innocent. There is no cure for this disease. With all of our degrees and intelligence and earnestness, there is no arguing with biology. There is nothing we can do but love him. I don’t believe in God or heaven or angels, and at the moment I have very little faith in this world, but I do believe in the transformative power of love. Only that. Ronan will feel that love — if not with all of his faculties, than in his body, in our breath on his head, in the lightest touch, in a vibration. He will never be without it.

Akira Kurowasa once said that “to be an artist means never to avert one’s eyes.” I read this in Robert Olen Butler’s book about fictional craft on the plane from Los Angeles to Santa Fe, in the days (was it less than a week ago?), when I cared about finishing my novel, or pursuing a life of art — things that don’t matter to me today. But I’ve been reminded of that quote this week as we discuss Ronan’s prognosis with doctors and specialists who poke and prod and examine him and take his blood and talk to us as Rick and I sit on crappy chairs and cling to one another in the corner of overheated, badly lit rooms, repeating one another’s first names. I’ve been reminded by my friends E and T and L that I’m a writer, an artist, and that I need to ground myself, somehow, in that knowledge. I need to stay in my body.

Today, this is what we know: Over time, and in fact, quite quickly, Ronan’s brain will gradually deteriorate. The skills he has learned will disappear. He will lose his vision. He will lose his hearing, his speech, his ability to swallow, and finally, his ability to breathe. This will involve logistics and tubes and seizures and doctors and scenarios that frighten me so much they make me physically ill and break my heart every single time I imagine them. In this situation, imagination does not serve me.

Today, this is also what we know: That he woke up happy and giggling. That we began our morning, as we always do, with the three of us in bed. That we kissed him and he smiled at us. That he experienced joy, and so did we. And that this, too, will continue. We will laugh with him. We will live.

Today, I know that my family and friends stand with us, and that they will scream and cry and fight with me. I know that they are coming in droves (droves!) to be with us now, and I know that we will never be alone. I am grateful for those who have done research, called doctors, written letters and filled out applications when I could not. I am grateful for friends and family who got in the car or booked the first plane ticket, or just cried with me, or cursed the world, or made promises that I know, from a lifetime of friendship, that they will keep. I am grateful for my parents, who hold and love Ronan and don’t look at him any differently and never will. I am grateful for Rick, who is, as our friend M once told me long before I met him, “the world’s best human.”

Today, I also know this: I am Ronan’s mother, and I will greet all of this head-on. This grief will not take me down. I will reach out to friends and family and other parents whose children suffer and die from this disease. I will learn about it, even though what I learn is terrifying. If I’m able, I will contribute financially to the fight against it. And most importantly, I will stay present for my child because that is what is being asked of me, however radically unfair and grotesque and ridiculous it is. And today, and every day until Ronan’s last, I will never, not for one moment, avert my eyes.